Chronic Fatigue Syndrome in Children and Adolescents
Rosemary Underhill, MB BS.
What is Chronic Fatigue Syndrome?
Chronic Fatigue Syndrome is a debilitating and
complex illness, characterized by incapacitating
fatigue (loss of energy and stamina) and multiple
symptoms in all body systems. The symptoms are
made worse by physical and mental activity and are
not relieved by rest. Patients’ ability to function is
substantially less than before the illness.
Chronic Fatigue Syndrome (CFS) is an unfortunate
name for this illness, because fatigue occurs in many
other chronic illnesses and the name does not
differentiate the pathological exhaustion of CFS from
the normal fatigue felt by healthy people after
exertion. The name CFS also ignores the multi-system
abnormalities found in this illness and trivializes its
severity. Although the illness is called CFS in the
USA, it is a global illness and in other parts of the
world it is known as Myalgic Encephalomyelitis
(ME). Current medical definitions of the illness now
use the acronym ME/CFS (1-2). ME/CFS is also
known as Chronic Fatigue Immune Dysfunction
Syndrome (CFIDS) and was previously known as
Chronic Epstein Barr Virus Syndrome (CEBV).
CFS in Children and Adolescents
Nearly one million Americans have ME/CFS, but only
15% have been diagnosed. A substantial but unknown
number of patients are under the age of 18 years.
Adolescents 12 to 17 years old are more likely than
younger children to develop ME/CFS, but children as
young as four years old have developed the illness. In
adults, three to four times as many women as men
have ME/CFS, but the gender ratio is almost equal in
affected children. ME/CFS usually occurs as sporadic
(isolated) cases of the illness, but in 20% of patients it
affects more than one family member. Clusters of
cases or outbreaks of the illness have been found
worldwide and in many of these outbreaks the illness
has been prominent in schoolchildren.
Causes
The cause of ME/CFS is unknown, but several factors
may be involved. In some families, where two or more
blood relatives have ME/CFS, genetics may produce a
susceptibility to the illness. Frequently the illness
follows an acute infection, and immune system
changes found in ME/CFS are similar to changes
found in some viral infections. In spite of much
research, no known infectious agent has been shown
to be the cause. Occasionally, ME/CFS is triggered
by: toxins, immunization, or major trauma. ME/CFS
is not a psychological illness. Depression and anxiety
may occur secondary to ME/CFS, but Major
Depression and ME/CFS can be distinguished by
behavioral, immunological and hormonal testing.
Symptoms, Diagnosis and Case Definition
There is no diagnostic test for ME/CFS. The diagnosis
is made from the characteristic fatigue, the pattern of
other symptoms and the exclusion of other fatiguing
illnesses. The main diagnostic features of the illness
have been incorporated into a number of different case
definitions for adults (2) and more recently a case
definition for children (1). An adult case definition (3)
has often been used to diagnose children, but it
excludes some children with genuine ME/CFS, who
do not exactly fit the adult criteria. Key symptoms of
the recommended pediatric case definition for
ME/CFS (1) are as follows:
• Clinically evaluated, unexplained, persistent, or
relapsing fatigue for at least three months, which is
not the result of exertion, is not relieved by rest, and
results in a substantial reduction in previous activities
• The concurrent presence of the following symptoms:
1. Malaise, fatigue, or worsening of other symptoms
after exertion, with loss of mental and/or physical
stamina, and delayed recovery of more than 24 hours
2. Un-refreshing sleep, day/night reversal, nighttime
insomnia and/or daytime hypersomnia (excessive
sleep), Disturbance of sleep quantity or rhythm
3. Widespread or migratory pain. The pain can be
located in the muscles and/or joints (without signs of
inflammation), in the abdomen, in the chest, or it can
be a new type, or an increase in severity of headaches
4. Two or more neuro-cognitive manifestations,
including impaired short term memory, difficulty in
concentration or focusing, difficulty finding words or
numbers, absent mindedness, slowness of thought,
difficulty understanding information and expressing
thoughts, educational difficulties
5. At least one symptom from two of the following
three subcategories:
a. Autonomic manifestations, including neurally
mediated hypotension, postural hypotension, postural
orthostatic tachycardia, shortness of breath, disturbed
balance
 b. Neuro-endocrine manifestations, including feeling
of feverishness, cold extremities, low body
temperature, sweating, intolerance to heat or cold,
change of appetite or weight
c. Immune manifestations, including recurrent flu-
like symptoms, sore throats, fevers and sweats, tender
lymph nodes, new sensitivities to food, medicines,
odors, or chemicals
• Other fatiguing illnesses must be excluded by clinical
examination and medical tests. Routine tests are
frequently normal, but specialized testing may show
various abnormalities in some patients’ immune
systems, nervous systems, cardiovascular systems
and/or in cellular energy production.
• The pattern and severity of the symptoms
experienced by a child may change markedly from
day to day or during the day. Children with ME/CFS
often do not look ill, so it is important to listen to
what the child has to say about the severity of his/her
symptoms. Mood changes, reactive depression or
anxiety may result from the illness. Many children
also have the symptoms of Juvenile Fibromyalgia
(pain and tender points, or areas, in muscles when
they are touched). It may also be difficult to
distinguish ME/CFS from Infectious Mononucleosis,
Rheumatoid Arthritis, Lyme disease, psychiatric
disorders or other illnesses. ME/CFS has often been
misdiagnosed, as School Avoidance Behavior, or as
Munchausen’s syndrome by proxy (a condition in
which, a parent fabricates their child’s illness).
Progress and Recovery
ME/CFS in adolescents usually starts suddenly with a
fever and flu-like symptoms. Sometimes the onset is
gradual. In younger children, a gradual onset over
months or years is more likely. It can be especially
difficult to diagnose ME/CFS in younger children,
because they may not recognize that their fatigue and
their other symptoms are abnormal. The diagnosis is
often made retrospectively when the child is older.
The first sign of the illness may be the child’s marked
limitation of activity, noticed by a parent or teacher.
Children with ME/CFS may be very ill at the onset of
the illness and the diagnosis is often uncertain,
because routine blood tests are frequently normal. By
definition the diagnosis of ME/CFS cannot be made
for three months, even if no other illness is found.
Sometimes a provisional diagnosis of ME/CFS can be
made sooner. Early diagnosis may lessen the impact
of the illness by ensuring the child gets adequate rest.
The severity of ME/CFS varies. Some children are
severely disabled and bedridden, while others can go
to school and a few even do sports. Most are between
these extremes. Remissions and relapses are common.
Relapses may be caused by over-exertion or by other
infectious illnesses. Over time, slow improvement is
likely. Recovery rates are uncertain but rates of up to
40% have been reported. Dramatic improvement is
more likely to occur in the first four years. Children
whose health improves to near pre-illness levels are
likely to find that they need more rest than their
contemporaries.
Management
Establishing the diagnosis of ME/CFS and confirming
that the child has a recognized illness will relieve
uncertainty in the minds of the patient and the parents.
There is no medication, which will cure the illness,
but medication can be helpful in the relief of
individual symptoms. ME/CFS patients commonly
respond to lower than expected, dosages of many
medications. Adequate rest is the mainstay of
treatment. Patients should be advised to adapt their
lifestyle to live within their capabilities. Advice on
nutrition can be helpful. Children with ME/CFS who
are unable to attend school will be isolated at home,
miss their friends and often need to give up their
favorite activities. They should be encouraged to see
their friends when possible and take up hobbies,
which are within their capabilities.
Education
Most students with ME/CFS fall behind in their
education due to cognitive problems and fatigue.
Many are too ill to attend school. A British study
found that ME/CFS was the most common cause of
long-term absence from school. Students with
ME/CFS may qualify for Special Services under the
Individuals with Disabilities Education Act (IDEA)
and/or Section 504 of the Rehabilitation Act, 1973.
Eligible students receive an Individual Educational
Plan (IEP) and the school should provide reasonable
accommodations and/or home tutoring.
References
1. Jason LA, Jordan K, et al. A Pediatric Case Definition for Myalgic
Encephalomyelitis and Chronic Fatigue Syndrome. J. CFS 2006;13
(2/3):1-28.
2. Carruthers BM, Jain AK, et al. ME/CFS: Clinical working case
definition,diagnostic and treatment protocols. J. CFS. 2003; 11(1):7-115.
3. Fukuda K, Straus SE, et al. The Chronic fatigue syndrome: A
comprehensive approach to its definition and study. Annals of Int. med.
1994, 121:953-959.
For more information
http://njcfsa.org. E-mail: njcfsa@njcfsa.org.
Phone; (888) 835 3677 (help line).
Revised 2007